cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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Meanwhile, one of our group got The Call this morning for his liver AND kidney transplant and is in the OR as I type. We have only one more man who's awaiting both a liver & kidney transplant in our group right now, which is great news!
I'm feeling pretty hopeful today and headed off to the store for a few food items to keep us stocked for a couple more days.
The gal who's on her 3rd liver is doing remarkably well & was released from Mayo Clinic today, with 2 more weeks of therapies to continue here. She'll go home 6/18.
Today was a grand day for many of us and one where we're feeling happy to be alive. My DD returns tomorrow from her Air B&B to spend some time with us and work her job from a comfy cushioned desk nook in the lobby. I'll pick her up after Chuck's morning appointment since she has to turn the car in with the Air B&B keys.
Hopefully we'll be driving home on Friday or by the weekend! 😁 DD will help me drive home (13 hr drive) since Chuck is still wearing a boot on his right foot.
So excited! 💞
Wowwwwwza! 🎉🎈🎉🎈🎉🎈🎉🎈
The Neurologist wrote him a prescription for physical therapy at home (for the drop foot) along with a recommendation for an AFO foot brace to wear in his shoe instead of that giant boot he's been wearing. She feels confident the matter will resolve in time, and goes with the territory for some who have undergone 2 back-to-back surgeries, lost a lot of weight in a short time, and have a habit of crossing their legs. It's already quite a bit better, so I'm happy she wrote the orders.
Now to sort through all this crapola here in our studio and get it packed into the car tomorrow, that should be quite the task! As it turns out, 2 of our support group members (past and present) live nearby to us in the Denver area, so we can get together down the road. I love that idea. The two men who were double transplants the other day are doing very well, both of them.
I'll post more updates as we go, but just wanted to let my supporters know that we MADE IT! Thanks to God, the Mayo Clinic, and the donor, for Chuck's new life. The doctor's told us he had well under 1 year left to live had he not gotten this new liver. To say we're grateful is a gross understatement.
So glad to have this news from you.
Looking forward to reading that you’re home, sweet home!
🎈🎉🍾🎉🍾🎉🍾🎈
You are going to miss out on our summer weather, lucky you!
If you’ll forgive the oddball analogy, your love for each other is like the elven rope in Lord of the Rings. Stronger than one would guess, lightweight, and infused with natural light. It is a testament to who you are as parents that your girl has your back through such a life or death situation. She sounds strong, and I am sure will find her path.
On a lighter note, I had noticed your new avatar and thought it was just a funny random dog pic. It made me smile. Then, I got caught up on this thread and realized that it was Honey and her very cool boots. I laughed out loud.
Wishing you much laughter in the weeks ahead, Hope
Just last night I realized my startle reflex is very revved up again and I'm jumping thru my skin at the slightest noise. My anxiety level is heightened these days & I'm having nightmares as well. It may be time to address that when I get home, if things don't get better. At first I was very surprised, but now, not so much. It's been a really long 7 weeks with a lot of ups and downs, a huge roller coaster ride and Chuck is feeling it acutely himself. For him I'd expect it though, he's the patient. We often discount the caregiver and what s/he is going through on these kinds of journeys. We shouldn't. It's hard for everyone, us included. I admire ALL caregivers everywhere for all we do, all we give, all the hard work we put out and how thin we spread ourselves in our effort to give of ourselves. It should never be diminished or discounted in any way. WE ROCK!
When I was going through the weeks of day in, day out hospital life after my (young) mom’s stroke while caring for my DH’s (old) parents, I experienced many of the same effects you are going through. It has got to be so much worse when it is the love of your life that is so touch and go.
I pray for the peace that passes understanding to envelop your heart and that your body and mind can experience that peace as well. You have been on such high alert for so long, it is no surprise that you are experiencing that heightened state. Do find time to do anything that brings you calm and don’t feel guilty doing so. Those “symptoms” indicate that something is starting to give, and it’s good to not let that take over and get worse. I am glad you are keeping that in mind to address when you get home. What you have experienced is very traumatic for each of you in your own way. Just because you weren’t under the knife doesn’t mean you didn’t suffer right along with him.
Take good care.
For us, the coming and going to the hospital with one crisis after another was exhausting! When we finally 'went home' and 'stayed" (Oh, those thrice weekly blood draws and then a clinic day--ugh!) and THEN, on Jan 1st, we changed out our healthcare providers (DH had his transplant out of network and they never did get it 'right'---I fought them and the ins company for over a year!) to the University Hospital that gave him incredibly better care. Things calmed down a lot.
I look back, and look at the charts I kept and the 'diary' and remember how cranky DH was and how very alone I was---and I am SO HAPPY for you that you have had a strong support system. I had to lean onto my sweet neighbors b/c all 3 of my daughters had all just had babies!! I also leaned on God, so much I found myself apologizing to Him for bothering him.
SO GLAD for you--this was not without the drama--but he will continue to heal and get better.
Just promise me you do something just for YOU everyday. I did not and paid a huge price.
And you're getting out of AZ before the really hot weather hits! I live in Utah and we don't get the super hot--endless days up north.
Prayers for you guys! Travel safely!!
Again, best wishes to you and Chuck, safe travel, and happy homecoming!
MidKid: the charts I kept with the triple bypass, and now again with the liver t/p. The labs will now be weekly (1x per week) at home, and he's already come down from the Tacrolimus quite a bit, which is nice. Chuck will have quite a few appts in Denver at first, between his PCP, cardiologist, physical therapy, etc, and I'll have to do all the driving, so we're trying to set up the appts LOCALLY and not downtown. But the cardiologist is only located d/t, and 'wound care' too, which is absurd since the 'wound' is totally healed, but Kaiser is a stickler about how they want things done. I intend to take care of myself too here, believe me. First thing I'm doing is calling my hairdresser b/c my hair looks like I stuck my finger in an electrical socket FGS. So dry, frizzed out & bleached out from the sun it's almost comical! But I did bring 3 cans of L'Oreal root concealer with me so the gray is hidden, at least :)
We're almost packed up........UGH......had more stuff than I thought. In fact, my suitcase wasn't very full when we came here and now I had to sit on it to zip it up :( I did buy a zip up Mayo hoodie for myself...got the last one they had at the Scottsdale campus gift shop and it was $45 vs the non zip hoodies I bought for DD and Chuck (pull overs) for $75 each. SCORE. Now we can take a photo together of the 3 of us wearing our hoodies. But not today, it's like 110 degrees out LOL
We'll be on the road by 7 am tomorrow, that's the plan, then overnighting in Albuquerque. Let the second leg of the journey begin! :)
And, seconding the vote to ask you to PLEASE do some self care, or even, something FUN for YOU, when you get home. 😀